Bone Marrow Test
Right – I must admit Ive been putting off writing this one – I was worried I would forget the details (you will know why soon), but I didnt have to worry about that in the end…
So – Ive explained the concept and process of a bone marrow test.
I got there early, dad took Nic and I in, and when the nurse stuck her head around and asked if I wanted to come through, I said no – half jokingly.
I didnt realise they needed to take bloods for general tests and virals – so I hadn’t prepared by drinking lots… They also needed a viable catheter for the sedative to be administered through…
ARGH! Now I know what chemo veins are like! My left arm wouldnt co-operate, and my generally good right arm wasnt either… The veins were there, but they kept disappearing – and cos I was relatively dehydrated, it was hurting! So anyway, another nurse came and tried the very VERY tender spot just above my wrist on my right side.. it kept stinging even when it was in, but I sucked it up cos it needed to be there and it wasnt too bad in relation to what was going to happen.
So the doctor had introduced himself and Id signed the consent form… by dad had disappeared by this point – not liking blood and seeing his daughter in pain, but I joined hubby at the bed in the clinic and whilst he wouldve been allowed to stay, I didnt want him to – I think he was a bit hurt, but it was something I just wanted to do by myself – keep the pain to myself… In the end Im kinda glad that I did.
The sedative went in, and the deal with the sedative is that whilst you still experience everything, you will forget it afterwards – it makes you drowsy, so many people sleep through it.
I woke up – I remember sobbing uncontrollably, and I remember the pain searing down my hip – the doctor called a nurse in, who came in, held my hand, wiped my tears and spoke to me during it. Then I went to sleep and woke up groggy a bit later.
I wonder whether it would’ve been better for me NOT to have the sedative and been slightly more in control of myself. Whilst I know no-one will blame me for my reaction, I prefer to be in control. Its not about embarrassment, or feeling or appearing weak – its about knowing my own strength I suppose. And if I’m completely honest, it is about appearing strong. I know people will think its crazy – why put yourself through pain if you dont need to? But in the end, I went through the pain anyway, so what was the point?
I dont know – its something I will have to work through I suppose.
The easiest way I can explain it is this – I have no control over what is happening, my treatment, the effects etc, so in the areas that I am ABLE to have control, it is empowering to think I have a choice – that includes my outlook and attitude during treatment as well.
Anyway, back to the test – the nurse mentioned later that the sedative probably didnt work because my heart rate got up to over 100, because I was so stressed, so I was chewing through the sedative like there was no tomorrow – hence it wore off.
When I woke up, I ate some lunch (the clerk/orderly there is great – makes fantastic hot milos!), and waited for Nic and dad to come back… I got my dressing on my neck changed – the left upper part of my chest is still numb – well, it switches from numb to highly sensitive, so we are assuming there is some nerve damage which will hopefully come back. So the dressing change was fine because I couldnt feel anything anyway. It was the first time the dressing had come off since the surgery – it apparently looks ok, but it will need to stay covered for a bit longer.
Then it was time to go – we wandered out – dad went ahead to bring the car around to the pick up zone out the front. As we walked out, I could smell cigarette smoke – something I LOATHE!!! Especially at hospitals! and I should mention my hospital has been a smoke free campus for about 12-18months by now.
We walked out, I smelt the smoke, and I, thinking I was compeltely lucid, but realising now that I was NOT, exclaimed:
“I can smell cigarette smoke! Who the FUCK is smoking?! “
I looked over and there was a guy sitting at the rest stop/waiting bench outside with the cigarette curled under his hand, trying to be inconspicuous, with a MASSIVE No Smoking sign behind him.
I shook my head and, I thought, lowered my voice:
“For fucks suck mate, its a fucking no smoking zone”
Nic at this point starting giggling, and thinking he was giggling at me, said:
“What?! Theres a fucking huge no smoking sign right behind me! And he cant have a go at me cos Im sedated!”
hehehehehehehehehehehe
Apparently my voice was not as quiet as Id hoped, and the reason Nic started giggling was because the guy smoking had very clearly heard me and looked so very shocked that anyone had said anything. By the time I had gotten into the car, apparently someone else had gone up to talk to him… the nurses were rather amused by this when I told them the next day, but I had their full support! 
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So the pain in my hip was there for a good few days – its really only been really today that Ive not had any pain – except for the fact that I tried to prove to Nic that I was ok to drive, with my neck and all, but I over-strained it, still cant drive, and my neck and shoulder are sooooooooooooooo very sore now – I cant stay at the computer much at all.
We wont get the bone marrow results back until tomorrow when I have to get the port in – and even though I wont find out the results, because I will have to see a doctor to tell me them – in which case it will be Wednesday before my first chemo – fingers crossed it SHOULD be clear! The results will slightly affect my treatment plan, which ive written out below, based on everything being as expedient and good as possible
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Treatment Plan
Monday - Port is inserted – I cant remember the exact name of it, but I will find out for you – basically its TWO catheter lines – one for giving me stuff (chemo etc), one for taking stuff out (like blood etc). This will be inserted into my chest – hopefully my left side, since I cant feel anything at the moment anyway!
Tuesday - rest
Wednesday - Day 1/21 – First Day of first chemo cycle – recipe Hi-DiCE (this is the chemo drug I am to be given over three consecutive days.)
Thursday - Day 2/21 – Second Day of first chemo cycle – Hi-DiCE
Friday - Day 3/21 – Third Day of first chemo cycle – HiDiCE
Chemo cycles – each chemotherapy treatment has whats called cycles – each recipe/drug combination has different cycle lengths, requirements for the cycles etc. My last one was recipe ABVD, and it was a 28day cycle, but I had two doses during that time (labelled A & B) that were 14 days apart.
The first chemo I am to receive this time has a 21day cycle. Each cycle starts from the 1st day of your chemo drugs being administered, until the next time/lot/dose. So even though HiDiCE requires three consecutive days of drugs, they are all part of the same dosage, so its 21 days from the first drug day, until the day prior to the following treatment day (so the following treatment day would be day 22) – I hope that makes sense.
Sunday - Day 5/21 – Start twice daily injections of G-CSF (Its either filgrastim or pegylated filgrastim) to stimulate bone marrow production – see HERE for a good description. This is dependent on if my bone marrow test comes back clear – if it does not, then the injections are on the back of the second lot of chemo.
Basically, this drug will stimulate my bone marrow to produce more stem cells, because chemotherapy kills all rapidly dividing cells in your body – this includes hair, saliva/mucus, nails, bone marrow (which is important cos thats where all your important cells are made). By stimulating the bone marrow, it produces stem cells, which, because it will be overstimulated, and wont need them all in the marrow, will be pushed out into the blood system, will be able to be ‘harvested’ when there is a high enough count, stored, and then given back to me after the chemo is done. Like my own self-bone marrow transplant!
From about Thursday onwards I will have daily blood tests to keep an eye on my stem cell count – once it reaches a certain level, I will be hooked up to a machine which will drain me of blood (not really), seperate and collect the stem cells, and pump the rest of the blood back into me again – because the bone marrow will be constantly producing the cells anyway, I wont become low on them. Once they collect enough for two transplants, which may take a few days!, I wont have to do the injections anymore, and thats that until the next chemo dose.
Weds - Day 22/Day 1 – Day 1/21 of SECOND chemo cycle - Hi-DiCE
Thurs - Day 2 – Day 2/21 of SECOND chemo cycle - Hi-DiCE
Weds - Day 3 – Day 3/21 of SECOND chemo cycle - Hi-DiCE
I will be given the bone marrow stimulant again, but it should be a one off injection, just to give my system a boost and help my blood counts recover. During the next 2.5weeks, I will also have a PET scan to see whether the cancer is gone yet or not. If it is, then I go directly onto the BEAM chemo – if the scan shows the cancer is still present, then I have another 21 day cycle of Hi-DiCE or they change the recipe.
Understanding that the PET scan is clear:
6 consecutive days of BEAM chemo.
THEN they will give me back my stem cells – similar to a blood transfusion.
Im not exactly sure of the days/timing of all this. Will get back to you Im sure.
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So I will probably be bald this time next week – ah well, I get to see if I have a good looking bald head or not, and I look good in bandannas and hats, so its ok.
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Im going to sign off here – my neck is getting really sore sitting here typing, so I am going to go have a rest now.
Check back in tomorrow or Tuesday for the low down on the port.
